I have no idea whether fatigue is something I just need to accept? Whenever I mention it to the doctors they look at me like I’m daft. “You’ve been through a lot” they say, “give your self a break”, “it all takes time”. Perhaps I expect too much of myself, but I really just wish I could be normal.

Every night, I get up once or twice to empty my jpouch, several times a night I wake thinking about whether I need to go to the loo. Since surgery I tend to have these vivid dreams, you know the ones where you feel like you’ve had a workout when you wake up? I also sometimes have stomach pains, butt burn and accidents.

So when morning comes, I just can’t open my eyes. I just don’t hear the alarm and Timm gets up with the kids. Every day. And the guilt builds… I wake up feeling so drained and exhausted that I can barely function. My limbs are like dead weights, my head fuzzy, my brain screams at me to go back to sleep. I feel lazy and guilty.

Timm leaves me to sleep as long as I need to. He never mentions it apart from asking if I had a bad night. But the guilt inside me is enormous, I feel I’m letting them all down. I feel like everyone thinks I am lazy.

I usually get up at 9am, a full two hours after I should get up. Some days I manage to get straight down into the office, some days I work from my bed. By midday I feel more energised and I try and get as much as I can done, but by 4pm I am flagging massively and could quite easily nap. Evenings are better for me, I feel more awake and often try and get housework done in this time. Then I’m usually in bed by 11pm (sometimes way earlier).

I don’t know whether it’s my routine that isn’t helping? Some nights, despite being completely exhausted I just can’t get to sleep and lay awake for hours.

Or I wonder whether it’s my diet? I have found I am now really intolerant to most vegetables and so my diet is quite restricted. The lack of vitamins and minerals worries me. I’m waiting for an appointment with the hospital dietician and have thought about asking to have my b12 levels checked. (People missing certain parts of the colon will have difficulty absorbing vitamin b12 and some need regular injections).

Sometimes I realise I don’t remember what normal is. My normal is so far away from other people’s that I wonder if my comparing myself to them is stupid?

When I say I’m tired, others talk of their tiredness too, and I think maybe I’m just not as tough as most people! Then I remember that my body has been through so bloody much in the past 18 months. That I’m missing an organ, that I’m learning how to use my pouch, that my body fights against me eating most healthy foods, that my immune system is knackered.

The thing I need to deal with the most though is the guilt. I feel like I need to apologise to Timm for how rubbish I am in the mornings. I feel like a bad mum and a rubbish wife.

I feel I need to explain to everyone that often I have a big front on. And that front is the mirage to tell you “I’m fine!” “I’m not weak” “I’m as good as you” “I don’t need anyone’s help”.

So when I’m seen on Facebook or instagram in the pub or walking the dog, know that it takes a big effort to do that, and I do it because I want to have the same abilities as others, I don’t want to be sick.

Know that every journey or trip requires planning to know where toilets are, a packing of wipes and underwear, a knowledge that using public toilets is an embarrassing experience because of the noise, that I’m using up valuable spoons to do that thing and will suffer for it later.

Please just have a little understanding that despite my brash, shouty, activist exterior I am still healing, still learning how to accept and use my new body and still dealing with the emotional trauma that the past 18 months have thrown at me.

Sam I know exactly how u feel about the tiredness and the guilt ! Especially hard when ure a mum too … For the first year after takedown ( I’m at the 2 yr mark now ) I felt exactly the same … I found it incredibly frustrating as I wanted to be well … My pouch was settling down so where was my energy ? I found out that my iron levels were slightly low after all the surgeries and having chronic illness for So many years .. Have u had ure iron levels checked ? My surgeon said pouchies should have an annual blood test to check b12, iron levels, electrolytes and the like…. Even a dip in electrolytes can make u feel exhausted … I hope u get to the bottom ( no pun intended ) of what’s causing ure fatigue …. Realistic or not I refused to accept it as my new normal and I’m sure there must be a reason for yours …
I still really struggle to get out of bed in the morning and thankfully my long suffering super star hubs gets up with the kiddies in the morning … I certainly wasn’t like that pre surgery tho maybe that was due to being on evil pred for so long which turned me into thinking I was super woman…
The intolerant of most vege I’m sure will change over time … I ate just carrots and potatoes for vege for a long time and now 2 years in can eat most Vege …..
Time and patience is required in bucket loads in the first few years of having a pouch unfortunately …( I have little of either of these but having a pouch has taught me that I must have patience )
Hope u find out why u are feeling so fatigued am sure there must be an explanation for it

Sam I know exactly how u feel about the tiredness and the guilt ! Especially hard when ure a mum too … For the first year after takedown ( I’m at the 2 yr mark now ) I felt exactly the same … I found it incredibly frustrating as I wanted to be well … My pouch was settling down so where was my energy ? I found out that my iron levels were slightly low after all the surgeries and having chronic illness for So many years .. Have u had ure iron levels checked ? My surgeon said pouchies should have an annual blood test to check b12, iron levels, electrolytes and the like…. Even a dip in electrolytes can make u feel exhausted … I hope u get to the bottom ( no pun intended ) of what’s causing ure fatigue …. Realistic or not I refused to accept it as my new normal and I’m sure there must be a reason for yours …
I still really struggle to get out of bed in the morning and thankfully my long suffering super star hubs gets up with the kiddies in the morning … I certainly wasn’t like that pre surgery tho maybe that was due to being on evil pred for so long which turned me into thinking I was super woman…
The intolerant of most vege I’m sure will change over time … I ate just carrots and potatoes for vege for a long time and now 2 years in can eat most Vege …..
Time and patience is required in bucket loads in the first few years of having a pouch unfortunately …( I have little of either of these but having a pouch has taught me that I must have patience )
Hope u find out why u are feeling so fatigued am sure there must be an explanation for it

I’m feeling exactly the same at the moment Sam. I’d share my spoons with you any day. You always make me feel more positive and make me feel like I’m not the only one out there with all these thoughts an feelings running round in my head.
Thanks Sam keep your chin up!

I’m feeling exactly the same at the moment Sam. I’d share my spoons with you any day. You always make me feel more positive and make me feel like I’m not the only one out there with all these thoughts an feelings running round in my head.
Thanks Sam keep your chin up!

Sam, two thoughts.
Help the dietician? Take with you your diet (food diary) for the last two weeks. Could be you’re missing Vitamin X?
Timm and mornings? Whenever you feel up to it, let Timm sleep in and you do it. Ease the guilt trip – give Timm a treat.. the lie in. If it’s irregular it will be a treat he’ll appreciate.

Sam, two thoughts.
Help the dietician? Take with you your diet (food diary) for the last two weeks. Could be you’re missing Vitamin X?
Timm and mornings? Whenever you feel up to it, let Timm sleep in and you do it. Ease the guilt trip – give Timm a treat.. the lie in. If it’s irregular it will be a treat he’ll appreciate.

It sucks to struggle with fatigue. I found out mine is most likely caused by low vitamin D levels. It can make you exhausted during the day and then it also messes with your melatonin levels which makes it hard to sleep at night.

I really wish that our GIs would take it more seriously though. It seems like a lot of people with IBD struggle with fatigue but no one is really doing anything about it.

Good luck with everything. I hope you are able to find a solution soon.

It sucks to struggle with fatigue. I found out mine is most likely caused by low vitamin D levels. It can make you exhausted during the day and then it also messes with your melatonin levels which makes it hard to sleep at night.

I really wish that our GIs would take it more seriously though. It seems like a lot of people with IBD struggle with fatigue but no one is really doing anything about it.

Good luck with everything. I hope you are able to find a solution soon.